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Ontarians with communication disabilities struggle to be heard

There are accommodations when people are blind or deaf, but not for this population of 165,000 people. A national awareness campaign is underway.

Krystine Donao, 39, received her master's degree in child and youth studies from Brock University, but has had difficulty finding employment since. (Peter Power / for the Toronto Star)

PhD candidate Colin Phillips, who is completely non-verbal and uses a letter board to communicate, was so frustrated by an experience he had with EMS that he has been working to improve awareness and help for people with communication disabilities. (Vince Talotta / Toronto Star)

Communication Disabilities Access Canada created this symbol to explain what communication access means

But for PhD candidate Colin Phillips, a call to Toronto EMS when he felt faint working out at Ryerson University’s gym proved even more upsetting as responders assumed he was developmentally delayed and avoided speaking with him directly.

Phillips, who studies homelessness policies, has cerebral palsy. He uses a wheelchair, his limbs sometimes jerk uncontrollably and he’s non-verbal. He communicates with a letter board. The paramedics wouldn’t talk to him “normally,” he charges, and kept asking his assistant for information.

“Like most people with CP, I get more spastic when I’m upset,” he writes by email, “so you can imagine this further complicated the situation.”

While Phillips eventually convinced paramedics he could communicate for himself with a little help, he’s one of 165,000 Ontarians who have communication disabilities that don’t include hearing loss. They struggle daily to be treated as fully sentient beings.

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These are people who are regularly assumed to be drunk and told to leave public businesses. They can’t get interviews, never mind jobs. They’re told they won’t be credible witnesses in a court of law and are asked to give away power of attorney to make it easier for bank tellers.

Some of them, like Phillips, rack up multiple post-secondary degrees, because it’s easier than finding employment.

Stroll with Phillips through Ryerson’s campus and people passing call out “Hey, Colin.” But even the confines and familiarity of higher learning don’t guarantee respectful, equal treatment, as he discovered when he needed that ambulance in 2012.

“More than anything, I was frustrated and scared that this happened in an environment pretty much limited to students and faculty,” Phillips writes.

“If you’re deaf, the hospital will pay for sign language services. If you speak another language, there are translation services,” Collier says. “For people with speech and language disabilities not caused by hearing loss, we have absolutely no services at all.

“This is a population that has basically been omitted or oversimplified,” Collier says.

They are also people who are the most vulnerable for abuse, crime and having their rights violated. “If you do go to the police or a lawyer, they’re not trained to communicate with you. It’s this big cycle,” Collier says.

The group is in the midst of a two-year national campaign called Communication Access Now http://www.communication-access.org/ . The government-funded project provides education and resources about how to make goods and services accessible to this population.

What they want is straightforward.

They want people to speak directly to them, assume they understand unless told otherwise, ask how to help, be patient and give them more time or repeat the question. They’d like people to not assume they’re drunk or deaf or shout at them. Or be afraid of them.

“Communication access is understanding what others are saying,” Collier says.

It’s not difficult to understand Krystine Donato. Her CP causes dysarthric speech, slurred from muscle weakness, but she speaks well. She walks with a cane, can drive and lives independently.

She also has an impressive resumé, with a master’s degree in child and youth studies. She easily builds relationships with kids.

But other than babysitting her friends’ kids, her employment has been contract work through Brock University.

After months of applying for jobs, she tried an employment agency and received a phone message to schedule an interview. When Donato called back and the person heard her speak, an excuse was given instead.

“Employment is hard for everyone, but it’s more difficult because I have a communications disability,” she says. “People think you’re stupid, you’re deaf. They don’t want to deal with you.”

Both Donato, 39, and Phillips, 30, rely on contracts through their universities for jobs.

Meanwhile, the group’s campaign is partly focusing on essential services, asking for policies and practices for communication access, core staff training, access to communication assistance when needed and access to emergency picture or alphabet boards.

“You can always go to a different coffee shop, but what if it’s a court of law, hospital, emergency services?” Collier asks. “We feel that the legislation right now does not meaningfully include or support this population and therefore we’re going to be no further along as things move forward.”

The legislation is purposefully broad and includes all disabilities, says Ann Hoy, assistant deputy minister for the Accessibility Directorate of Ontario http://www.mcss.gov.on.ca/en/mcss/programs/accessibility/ . “The act uses the same definition as human rights for disability,” she says.

That’s not good enough, Collier says.

The group wants accessibility for communication disabilities included on multiple legal fronts: clear guidelines for businesses and organizations on how to make communication accessible; more representation on accessibility committees; communications assistant training and services within essential services; training for front-line staff; and access to communication assistance and tools.

Phillips was bothered enough by his experience with paramedics that he and Collier met with EMS Cmdr. Adam Thurston to complain, hoping it might lead to definitive action. In Monterey, California, there are 300 volunteers trained to use communication displays within the emergency response system.

“Colin clearly communicated to the head of the EMS that there needed to be procedures in place and training for EMS services, so that this would not happen again,” Collier says.

EMS referred them to the city, which in turn referred them back to EMS, she says.

“Their answer is always: ‘But it’s a small population,’ ” Collier says, begging to differ. “This is not a small population. It’s a population that is not taken seriously.

“We need ramps for communication the same way people need them to get into buildings,” she says.

As it is now, people with communication disabilities requiring essential services usually need to rely on family and friends. There’s currently no obligation to provide that service, a situation Collier calls “the Dark Ages.”

Phillips lives in his own apartment downtown and has assistance at certain times of the day. But he’s on his own a fair amount. He is capable of communicating with the world around him.

“The reality is I am a single guy alone in Toronto with aging parents,” he spells out on his board. “I could give power of attorney to (my assistant), but no thanks. He could get a job somewhere else and have to leave. People think it’s simple.”

One hospital system’s efforts

Each employee of the University Health Network's four hospitals — Toronto General, Toronto Western, Princess Margaret and Toronto Rehab — must undergo training on how to communicate with patients or employees with special needs.

In addition, letter and picture boards are available for anyone who needs them, says Jacqueline Silvera, senior manager of diversity and mediation services. The onus is on the staff to provide the service, not the patient or family member, she says.

"It's the employee who has to make sure that they know all those things, resources and support services that are available," Silvera says. "We have nine dedicated policies about accessibility and we have two that are specific to communication requirements and needs."

In training, staff must experience what it's like to communicate using letter and picture boards, “so they understand while it's being used they're respectful, patient, so the individual can provide that information with the communicator board," Silvera says.

They began implementing accessibility legislation — including communication disabilities — in 2003.

"You have to spend equal attention to mobility as you do communication,", Silvera says. "Communication and language is such an important piece of this.

According to Barbara Collier, executive director of Communication Disabilities Access Canada, people with these needs often have bad experiences in hospitals. For example, it's not unusual for nursing staff to lock up a patient's letter board for "safekeeping."

According to Silvera, that should not happen at any of the UHN sites.

"We can anticipate that a good percentage of our patients are going to have communication requirements," she says. "It has to be part of the way we do business."

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